Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Audra-I love that you said ref to huge infusion room...my oncologist center is the same...depressing as hell. I elected to have mine at the hospital. You get private room with TV and your own bathroom...there was a big room in part of it..where they had dividers, though. They also said they always schedule where you are in the same room at all times. It had a twin bed if you wanted to sleep and a recliner (which is what I used) with a side table and bell for nurse..never had to use bell..as they were always checking. I'm sure all hospitals are different, but you could check different ones. Good luck!0 -
thank you, ckmoss0 -
Hahahaha! My bad - it should have been www.softhats.com
Sorry everyone!0 -
ckmoss- vent away!!!! I completely get it! My MO says thT he does not do routine blood draws because even if it is low, it will just come back up anyway. While I get that, I am also not getting Neupogen or Neulasta, and would really like to know just how careful I need to be! I have a huge list of questions for MO next week. I want DH to go with me to have a voice besides mine. I want to know the risk/ benefit of 4 vs 6 treatments. I am scheduled for 6. I may ask him to have the oncotype run. If it is low, them4, if it is moderate or high, then 6. If not that, I would like a Ki67 score. I don't have any of this info. I also want to get copies of all of my labs. They routinely give copies of the ones with blood counts, and those go to a website where I can sign in, but the other blood work with info on the liver and such is not handed out and does not go to the web site. His PA balked last week when I asked for copies, so this week I will be more persistant because it is my right to see these. OK...now I'm venting, aren't I????
As far as hats and wigs, I got my wig from www.voguewigs.com. I would look ther at any you order from other places too, because they have pictures of "real" people in them in the comments section which helps a lot. I also got skullcaps or "do rags" from www.bandanaworld.com. I love these and wear them anytime my wig is not on. They are very comfortable for me.
I did slog my way through a 3 mile run today...if I call it a run...very slow, but at least I got out and about. Race for the Cure is in 2 days.0 -
KBeee- Your Ki67 score may be on your pathology report. You should be able to get a copy of the full pathology report from your breast surgeon. Yes, you do have patient rights and it does include your doctors to provide you copies of your labs, tests, etc. I find it a little odd that your onco does not do blood lab work prior to your chemo rounds. It is the only way to know that your blood counts are sufficient to handle the chemo round. I received my chemo infusions at a major hospital infusion center so the blood results were quickly available. My onco signed the chemo pharmacy orders only after she had seen the blood lab work. Just write down your questions before your next appointment so you won't forget any of your questions. Good luck!!!!
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so now my cold turned into fever and I had to call the onc on call..he called in Levofloxacin which I just took and told me to come back tomorrow morning to redo blood counts (was in Monday). I can't help thinking....does this mean I can stop chemo. Very disappointed I. How much this sucks despite so much complementary treatment t and supplements. I also have to go to the bathroom urgently every 20 minutes or so and had to change my underwear several times today. Wondering what is going on! This is so much harder than surgery and I feel so alone.0 -
Jtrosesav -- so sorry your cold tuned into complications. It is hard enough to deal with the fatigue and the minor SEs -- dry mouth and the digestion issues, but just when you think you are over the hump, you get another setback. I know exactly how that feels. I had some bumps in the road this first tx as well -- WBC count was very low (1) after 7 days, and I developed a "diaper rash." My MO sent me home and said the WBC was probably on the way up. But the next day I got a fever, so had to go back to MO for a shot of Neupogen and a 7 day course of Levofloxacin. I felt crummy for one more day, but then started to improve over the weekend. Went back to check blood levels on Monday and WBC had improved to 3, so MO said I will be good to go by next infusion on Halloween. This time around I will have the Neulasta shot (hopefully -- insurance has to approve) the day after. You aren't alone when you are on this board -- we are all in your pockets!! ((((Hugs))))0 -
Jacquie, I hope the antibiotic kicks in and you kick that fever. Eat some yogurt if you can to hopefully help ward off a secondary yeast infection. I hear you on the feeling alone. I was having a pretty rough day today too...not feeling rotten, just tired and alone. So you are not alone in feeling alone....if that makes sense. I sure hope you are feeling better soon.
Melrose, He draws blood the morning of my infusion and he gets the white count, hemoglobin, platelets, and such. I meet with him about 45 minutes later, and I get those numbers; they print them. I asked about the rest of the blood work and they said that the other labs don't come back until the next day. I asked then to have them from my previous visit and the PA I saw last time danced around it. I see the MO before my chemo next Friday and I will tell him I want a print out of all labs, and the ones not ready that day, should be mailed to me the next day. I have been getting a lot of abdominal pain days 3-7, so I think it is fair of me to want to see those numbers. I have the pathology report from my BS and from my original biopsy, and the Ki67 is not on either of them. I asked BS about it way back when and he said they did not run it. DH has not gone to any of my MO visits, but he is going next time. Questions are all written down! They are in my phone, so I write them as I think of them.
Itnis almost Friday, so another week is almost done.0 -
thank you, KBee. Just called a friend crying and asked her to come and she is coming. Hubby not responsive right now.0 -
Kbeee I think you should get the oncotype done. At least it would be a little more information. I wanted to do that too, but I kinda already knew from my path report that mine was a pretty aggressive type of cancer. Sucks. I am also going to do the genetic testing if my insurance will pay for it (anyone else have it done?), because if I am positive for either one of the breast cancer genetic defects I will have a mastectomy done on the other side too.
Jacquie, I had to take antibiotics on this first round too (weird rash my doc couldn't explain). They actually helped a lot, and I felt a little safer on them, if that makes sense? I didn't worry so much every time one of my kids sneezed in my vicinity.
I'm tired today though. Seems like I only feel normal if I sleep 9 or 10 hours a night. Exercise does seem to help, so I am trying to do something every day.
TeamKim, my hair is definitely going too, and fast. I ordered a wig but it won't be here until Monday. Not sure I'll make it 'til then, but I have some hats just in case.0 -
Jacquie- I get hub unresponsive. Mine has been the bomb all through this..but when I have felt sad/alone I would come on here or call a friend. He really doesn't know what to say. He gets real quiet, which I know ..with him..means he's upset and doesn't know how to express or what to say. When i was told of my diagnosis...we left there ...got one block down the road..I started to tear up a little..he was quiet for a minute and said.."Whats wrong?". This, of course, was met with lots of unmagical words from me. Lets just say he didn't ask that again. lol. I know he just didnt know what to say. He's a big manly man. If he could beat up cancer he would for me. You just find from other places and its great you have a friend that will come. I've 2-3 thats been right there for me. ...and a few that I never in a million years would think would step up -did.
I've got to go to radiation oncologist today. I know this isn't the board for radiation..but since I already "know" ya'll........I spent 3 hours on computer last night reading every reputable article and website I could find. I just don't know now. The risk of lymphedema is high with radiation to lymphs and risk of heart issues (heart attack, valve issues) is way up there when you have radiation to chest wall. Im under the standard (5cm plus lump size..mine was a 4...and 4plus lymphs involved -mine was 2/12. The risk of recurrence in first 5 years is 16%..with radiation it goes down to 14%...only 2% diff compare to risk of heart issues/lymphedema..But what if I need to be in that 2%..or what if heart issues...Jeez! Its like a crap shoot...I don't know the answer. I know radiation scares the crap out of me. I don't know what to do. This rad onc is in the same bldg with onc..so I know what she is going to say..as my onc is known for throwing whole kitchen sink at cancer..risks be damn..she will go with him..I guess Im going to have to get 2nd opinion..Drs around this town are pretty behind. I wonder can you have your records faxed out of town/state and that be considered a Drs visit. Like do you have to be there? Also, I read that a good bit of women have to be out of work halfway through rads as it brings on the same fatigue as you get with chemo. I can't be out anymore..I mean my work would let me..but financially. Anyway, you can see my mind is in turmoil this morning. Thanks for listening0 -
ckmoss, the decision on the rads is a tough one. It is so frustrating that there are no cut and dry answers. I think getting more than one opinion would be helpful. I hope your appointment today goes well.
My DH is also on the unresponsive side. He is more of an action person that a words person; he always has been. He is good about calling a friend for me if I need to talk. His whole family is that way. It is challenging though, especially in times like this where I just sometimes need to vent!
I am doing the Race for the Cure tomorrow. My legs feel like they are made of cement, so my hemoglobin must be low, but I am going to try and jog those cement legs the whole 3.1 miles. After this, if I am as tired as I am now, the rest of the way through, I'll just have to stick to long walks, and hold off on more running until spring....which can't get here soon enough for me!0 -
Hi ck
yes the rads are a hard call - for 2% ?? As you rightly say <5cm , grade 1, only 2 nodes etc etc sounds to me like risks out weigh benefits - you know the drill.
I am intrigued why your footer says mastectomy right for both 15th May and 21st June. Was it margins ? If your margins are slim then that might be a reason to consider rads ???
I asked 2-3 times - should I have them ??? BS and Onc adamant No ( same with prophylactic Mx - he was dead against !!
Remember if you don't have them now -IF you ever had a new primary ( or a reoccurance) then you still have the rad arsenal up your sleeve ??
Entirely your decision - best wishes whatever u decide)0 -
Nocomp-I got seroma in MX site and surgeons words..we will have to go and take more tissue out and also do complete emblazon of MX site. There was no where to put that so I just listed as 2nd MX..as surgeon said that it was getting more in same site.
Kbee-Are you doing radiation? Did you have positive nodes?
Just got back from rad onc. She disputed almost everything I had documented. She said that 3-4 cm lump put me in a grey area..and that it is a 20% chance that radiation would help recurrence. No where did I see that high of an amount. She said have any lymph positive automatically puts you where you should do it. I do agree that I am in a grey area..only thing I agreed with. She said there is no risk at all for heart issues if you are radiating on the right side. I am going to go back and read to see if it specifies that. I do know that it is higher risk if on left side, but the way I read..high either way. Is strong risk for lymphedema, but says that she has only had 2 patients in 2 years. I have horrible fear of that. I am going to go for 2nd opinion..in Charleston, SC. The medical university is down there and I have higher faith in those doctors. She also wanted me to have 30! People in my support group that should def being getting rads don't get that much. This has made me in very cranky mood. Not sure if you can tell this is being written in very pouty sulky way. LOL.0 -
KBeee- Hope you get the reports with no problem after this next appointment. Some oncos are used to having patients be spectators in their health care while others are active in their treatments. My onco is always happy to answer any of my questions and responsive about getting me my information. I think she was a little surprised at first about my numerous questions and need for information but she understood that I wanted to know and learned that I am proactive in taking care of myself. As for your husband, sometimes it is so very hard for others to go to these appointments. Just like any of us, they have never travelled this way before and so all of this is new to them and they don't know how to react. So instead of getting past their own personal fears, they retreat. Sometimes, the words are not easily there to tell others that one really loves them and cares for them. You may just need to say...." I need hugs and some words at times to help me go through this. Please give that time because it will be good for both of us... it's a part of my treatment" and then just hug/kiss them often. Thank goodness you can always come here and vent and say what you need to say. Sorry I don't live closer or else, I would be happy to go to whatever appointment/infusion you have and listen to you say whatever you need to say. You just keep pushing forward and hang in there.
ckmoss- You can sulk and pout vent here anytime!!! We get it here!!!! Hope the second opinion helps you so you will know what is the right treatment path for you. Nothing wrong in getting a second opinion!! As for the lymphedema, I have several bc friends who post rads had the lymphedema crop up. Unfortunately, from the reading I have done about lymphedema, the risk of lymphedema is present after the node removal. I don't know if you know about this lymphedema website: http://www.stepup-speakout.org/. I had 5 nodes removed and have take precautions with my SNB arm as best I can. I wear an off the shelf lymphedema sleeve and hand gauntlet whenever I fly or go into higher elevations. My BS said told me that he didn't think I would develop LE but I decided to spend the money for purchase the sleeve and hand gauntlet. Again, keep us posted what your next phase of treatment. Wishing you the best.
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Melrose-Thanks so much for link! I will def check it out. I am in the process of getting in to the Cancer Center of America in Atlanta, GA for 2nd opinion. She said that every step of the way, there is never just one specialist at a time..that you have a whole team meeting about your from surgery to finish line and that 5 different specialist would review my entire treatment plan and give 2nd opinion. I wished I could have gone there first..but only way I can now is I have hit my ceiling in insurance. I was reading their website about radiation and if I have to have would love to do there. It seems they are very up to date in their approach..but that, too..because of time..work..3 1/2 hour drive..no way could I drive that every day. So, I will be content with their recommendation.0 -
ckmoss- I had just one node removed, and it was negative. That is why I want to push for the oncotype to help make a decision that doing all 6 is the right choice, versus 4. I am all for 6 if it is justified, but I do not want to risk lifetime side effects if it is not justified. These decisions are all so hard! Where's that little crystal ball when you need it?!? It sounds like you have a second opinion lined up at a great place!!!!!0 -
ck - hope the Cancer Centre can give you the answers you are looking for - the rads people do sound somewhat over zealous. I agree and have read myself all the stats u seem to be working with so I think you are very def right to question what is best for you
its weird isn't it when we are given the 'softer' options ie no rads or 4TC we question it and think we need more yet when we get told 6xT, or rads we think. But do I really need that much
Thnx for explaining the dbl Right Mx - makes sense now
I like the firecracker fb group idea.0 -
Well ladies, I did it. I have been so tired this week, I was not sure I would be able to make it. My goal before starting chemo was to be able to do the whole 5K when the Race for the Cure rolled around, and I did it in 31:32. My legs felt like lead, but I still drug them the whole way. Take that breast cancer!!!! The most surprising thing for me was that I was very, very emotional. I am not sure if it was hormones, 10+ thousand people there for the same cause, just everything bottled up inside, but I had tears streaming down my face for about 3/4 of the race. I am not sure if they were sad tears, frustration tears, let me just finish tears, or happy tears; I suspect all of those.0 -
Here's a great website for ordering cheap bandanas/scarves/beanies: www.bandanaworld.com
Jacquie - my husband was amazing and very supportive in the beginning, especially during my surgery. But when the first chemo was approaching, he panicked. Not sure exactly why, but he was scared. Two days before chemo was to start, he packed a bag and went to a hotel. He said he needed a couple of days to think and be alone. This really freaked me out, and I called my 24 year old daughter and another close friend who came over and stayed with me that night. The next day, my husband came home completely renewed. He had called a friend from the hotel who had cancer and also had been a caregiver for his wife when she had cancer. They talked for hours about how important it is for me and my recovery for him to be my supporter right now. My husband has been amazing again ever since. He is there for me every step of the way. He just needed a little time alone, plus talking to his friend who had been through it both as a cancer patient and a caregiver for his wife during her cancer treatment. My husband isn't one for support groups, so being able to talk to a friend was better for him. I hope things are going well for you now.
Yesterday I had chemo #2, and it went well. My port is working fine now, and that was a total relief. I'll start the neutrogen shots tomorrow, which was hard last time with SE's, but kept my wbcs up. At Kaiser in Oakland, we get our blood tests done two days before chemo, and that same evening the results are emailed to me so that I'm kept informed. All labs were good this time, but the Onco nurses said that could change as the chemo's go on.
Last week I started a yoga class for cancer patients. It was the most amazing feeling afterwards. I was having a low day when I walked in, and when walked out I had the biggest smile and feeling of peace. The class is provided at the Women's Cancer Resource Center in Oakland and is totally free. I highly recommend yoga for destressing!0 -
Yay KBeee, congrats! Good for you for doing it! That's amazing.
I had a pretty good day today, got out and planted some spring bulbs for next year, and it was a beautiful sunny day in Seattle (hard to believe). However I have had this growing pain in my right hand, kinda like a bruise, right in the middle of my palm. Maybe peripheral neuropathy? I'm going to call tomorrow, and hopefully won't have to change anything drastic about my treatment. #2 on Weds. Have to start the steroids on Tuesday, ugh. Not my favorite part. Oh, and I have another cold, yay. On the plus side, my immune system seems to be handling the cold no problem.
The hair is gone. Made me kinda sad, but I have a wig and some hats. My son (he's 7) said, "mom, I would really prefer it if you wore the wig all the time." My daughter (also 7) doesn't seem to care one way or the other. Go figure!
Happy Monday, ladies!0 -
Hi everyone,
This is my first post in this forum, but I have read about 10 pages pack in the last couple of days. Today I picked up my premeds, zofram and a steroid. It makes chemo more real to me. I get my picc line put in tomorrow and also am going to the "look good , feel better" program tomorrow. Chemo starts on Thursday.
I also am meeting with my GP for an anti anxiety just in case I have difficulty on Thursday.
Any one else starting this week?0 -
SchoolCounselor- Just keep breathing. You can do this!!! Make sure you drink plenty of fluids the day before you have your chemo round. You want to have those veins well hydrated for blood lab work draws and the infusions.. If you have a calendar, write down the days and time of day you take your zofran and steroid so you don't forget and so you will take them at the same time everyday. When you take your meds, make sure you take them with food and plenty of water; those drugs can cause nausea on their own if taken on an empty stomach. The Zofran is also known to cause constipation. You can help that situation by eating a few prunes everyday, drink prune juice/apple juice and if your onco approves, an OTC drug. This first round may last a little longer than the ones to follow so don't be too surprised about the length of time you are there. Take snacks and a lunch to eat since you may get hungry during the infusion. Yes, you can eat and drink during the infusion. If you need to use the restroom, just buzz the nurse so she can unplug your IV pole from the wall. You will do just fine. I hope you are having someone with you like a significant other or friend; it helps make the time go by faster. Hope you know to eat/suck on ice during the infusion to help minimize/prevent mouth sores and icing your fingernails and toe nails to minimize nail damage from the Taxotere. If you have questions, please post. Wishing you the best!!!!
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Schoolcounselor, I am not starting this week, but I am getting my third on Friday. I am doing 6, however and not 4, so if you are doing 4, we will finish the same week. I found my first treatment to be very doable. The most annoying thing to me was that everything tasted awful for the first 2 weeks, and I have had a persistent sore throat. I have also had some pain on and off, but I have found it to be doable. The actual day of the infusion, I felt just fine both times. I have iced as suggested by others. Post any and all questions you have, and let us know how it goes.0 -
Hi School Counselor, I have a PICC line, too. And I just received my second round of taxotere and cytoxan. As others have stated, make sure you hydrate well (try for 2L of decaffeinated fluid) the day before chemo, as well as the few days after. I've found it really helps to decrease the side effects! Feel free to reach out with any questions. Take care and good luck on Thursday! We'll be sending you positive warrior vibes!!! -Dewey0 -
Thank you ladies for the welcome, this whole chemo thing is so nerve wracking. Picc line is in, I needed a lot of lidocain, but it went smoothly otherwise. Earlier today I saw my PS who confirmed that one of my tissue expanders is leaking...that will have to wait until after chemo. I also attended the Look Better, Feel Good program and got make up tips for chemo. I just want Thursday to come, although I am going to see my Internist tomorrow to get some adivan or xanax, just in case, I freak out on Thursday.
When you say "ice your fingernails", do you mean for the duration of the Taxotere, or on and off?0 -
I ice my fingernails and toenails for the taxotere infusion, as well as 15 minutes before and after. I use bags of frozen peas. I also chew on ice to help prevent mouth sores.0 -
I ice my fingernails and toenails for the taxotere infusion, as well as 15 minutes before and after. I use bags of frozen peas. I also chew on ice to help prevent mouth sores.0 -
SchoolCounselor :Here are some icing tips that I have previously posted. Hope it helps.
FOR THOSE ICING NAILS : Always clear anything you want to do with your oncos. You will need to clear it with your onco about icing since not all oncos will allow icing during the infusions. The Taxotere icing time period is 1 1/2 hours ( 15 minutes before the infusion, 1 hour during the infusion and 15 minutes after the infusion. For Taxol, the icing period is 3 1/2 hours ( 15 minutes before the infusion, 3 hours during the infusion and 15 minutes after the infusion). At the suggestion of my onco, I am using clear nail polish on my nails to help keep them strong and also icing the nails to help prevent nail damage which is a side effect of Taxotere. She suggested that use Sally Hansen Strong As Nails Clear Polish but I switched to Essie polish since it doesn't chip as much as the Sally Hansen brand. Essie polish costs more but for someone like me who never used nail polish before chemo, the fewer times I have to apply polish the better. I don't mani/pedis but some do. I'd rather avoid the germ issue at nail salons and taking of a chance of getting nicked.
ICING :
- Time period for icing- You will for 1/1/2 hours in total= 15 minutes before the Taxotere infusion + 1 hour during the infusion + 15 minutes after the infusion. For Taxol, the icing period is 3 1/2 hours ( 15 minutes before the infusion, 3 hours during the infusion and 15 minutes after the infusion).
- Ice- You can use frozen peas in quart size ziploc bags marked "Do no eat!!!" and reuse those bags of peas. Some have used small reusable/refreezable ice bags you can get at the drugstore in the first aid department. I opted to use ice. I have an ice tray that makes small rounded bottom circular ice. I tried the peas and decided I liked the ice better because I thought it stayed colder longer. My infusion center has ice available for me to use if I want to use it. I always bring an extra bag of ice just in case I need it.
- Transporting ice to infusion center- I use a cooler with a freezer pack plus take extra infusion ice bags.
- What to put the ice bags in- That is a personal preference. Some just put the ice bags on their feet and wrap a blanket around them so the bags don't fall off. Some use insulated lunch bags and put the ice bags in those. My hands and feet are small so I'm using some neoprene wine cooler bags that I bought at Target for $6.99 each. I figured I could use the wine bags later on. I'm still able to hold an insulated mug so I can drink really cold water and eat ice during the infusion. I have pretty small hands/feet which explains how I am able to use those Neoprene wine bags.
- Hand & Feet Protection- I wear thin sports socks on my feet when I ice the toes. The socks keep the rest of my feet warm during the icing. On my hands, I wear a pair of knitted wristlets/fingerless gloves to keep the rest of my hands warm. If you don't have knitted wristlets, you can make some from men's socks by cutting holes in the toe area. Some people take their feet/hands out of the ice periodically; however, I don't do that.
- Process- I let the infusion nurse know that i'm icing so we can coordinate when I should start the icing. Once I know when I'm going to start the infusion, I put the ice bags in the bottom of the Neoprene bags. I put the ones on my feet first and adjust the ice bags so my toes nails are covered. I then put the ones on my hands on and adjust the ice to cover my fingernails. My husband helped me with this process.
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Hi SchoolCounsellor
icing was banned by my onc.
I never iced anything Still have all my nails, no discoloration , never had one mouth ulcer although had the usually yucky taste buds and 'burnt mouth' sensation certainly with TC I think icing is overrated and a lot of hassle / pain for questionable gain JMHO !!)
The only concession I made was wearing black nail varnish constantly. My onc took one look at my nails and said you know that doesn't gave any effect !! I dud it anyway. So who knows .... Do want you feel comfortable with. And best of luck I hope your SEs, ( if any) are minimal0
